Missing Data: Canada’s Inability to Properly Measure and Address Health Inequalities

Article by Stacey J. Butler

Graphic design by Ava Schroedl

Canada may have a universal healthcare system, however the treatment Canadians receive is far from equal. Canadian rapper, John River, was experiencing shortness of breath and severe headaches, yet these symptoms were dismissed by hospitals in Toronto, simply because of his appearance and skin colour. Instead of his complaints being taken seriously, he was stereotyped, viewed as uneducated, and assumed to be faking symptoms to obtain drugs. This case of systemic racism resulted in significant delays in treatment and left John River in severe pain for months on end.1 Stories like this bring to light the health inequalities experienced by racialized individuals in Canada. Despite culture and race (or more accurately, racism) being recognized by Health Canada as important social determinants of health,2 our healthcare system does not routinely collect data on race or ethnicity, with the exception of indigenous identity. Failing to collect race or ethnicity-based data in Canada is a major limitation that negatively impacts the quality of our research and our healthcare system. It prevents us from understanding the diversity of our patients and from being able to detect inequalities that we know exist as a result of systemic racism.3

The terms race and ethnicity are often used interchangeably, despite having different meanings and contexts. Race is a social construct that categorizes people based on visual traits such as the colour of their skin.4 Ethnicity refers to groups with a shared culture, ancestry, language, or belief system.4 Race has been used both historically and currently to discriminate against, exclude, or marginalize a group of people, and results in unequal opportunities. It is crucial to understand how both race and ethnicity contribute to health inequalities in Canada. Data on race can be used to identify health inequalities that exist due to bias and racism. While data on ethnicity can be used to understand and identify cultural barriers to healthcare.4

Since individual-level data on race or ethnicity is not routinely collected in Ontario’s healthcare system, population health studies have resorted to using alternative methods to measure health inequalities. Typically these methods rely on neighbourhood, or area-level data available from the Canadian Census. For example, the Ontario Marginalization Index (ON-Marg) addresses race and ethnicity by identifying areas of Ontario with a high ‘ethnic concentration’, defined as areas with a high proportion of the population who identify as a visible minority or are a recent immigrant (arrived to Canada in the past five years).5 The ON-Marg tool is limited by its use of aggregated, area-level data, as opposed to data on each individual’s ethnicity. An additional limitation is the so-called ‘healthy immigrant effect’, where recent immigrants are generally healthy but their health deteriorates over time. Furthermore, in the case of diabetes, this deterioration is greater for immigrants who belong to a visible minority group.6 Nonetheless, the ON-Marg tool is still useful to study several social determinants of health in Ontario at the neighbourhood level.

Given the limitations of area-level data, epidemiologists at ICES, a population health research institute in Ontario, have gotten creative with their approach to addressing ethnicity. They have developed a tool that uses surnames to identify people of South Asian and Chinese ethnicity.7 Using this method, researchers have uncovered differences in the risk of several diseases and in the severity of mental illness.8 However, the surname algorithm is only able to categorize people into two distinct ethnic groups (South Asian and Chinese) and lumps the remainder into a ‘general population’ category. Thus, it cannot measure health inequalities in other ethnic groups that exist within the Ontario population, reiterating the need for individual-level data on ethnicity.

The COVID-19 pandemic has put race and ethnicity in Canada in the spotlight, as aggregate, neighbourhood level data draws our attention to the disproportionate rates of infection and mortality among racialized communities.9 Visible minority groups are seven times more likely to have COVID-19 than White Torontonians.10These observations have created a call to action for the collection of individual-level race or ethnicity-based data in our healthcare system. Local public health units began collecting race-based data for patients with COVID-19 in the spring of 2020 and by the summer, information on race, income, household size and language was being collected across Ontario.11 This is a positive step forward, but it should not have taken a pandemic to propel us to collect this information and begin to address health inequalities in Canada that have existed for decades. 

Although there are difficulties in navigating the collection of race or ethnicity-based data, it is essential to collect this information in order to properly measure and address health inequalities in Canada.3 We must ensure that this data is used to improve the health of racialized individuals  and not to further marginalize or segregate them.  It is also essential that privacy and confidentiality is maintained.4 The Canadian Institute for Health Information (CIHI) recommends working with community groups that represent racialized individuals, in order to identify relevant research priorities.4 Simply collecting the data is not sufficient if the results are not communicated to the public and policy-makers. Most importantly, any findings of inequalities must be addressed with targeted interventions to create substantial change.

Lastly, it is important to recognize that many social determinants of health are inter-related and changes outside of the healthcare system are needed to have a widespread impact. Systemic racism affects opportunities and access to employment, education, housing, clean water, healthy food, and a safe environment.3 We can all do our part in addressing these social determinants of health by acknowledging our privilege and getting involved with underserved communities. The Wellesley Institute (https://www.wellesleyinstitute.com/) and FoodShare (https://foodshare.net/) are two great examples of local initiatives that strive for health equity in Toronto.


  1. Amin F. Falling through the cracks of Canada’s healthcare system: the John River story. City News. 2019 Dec 4; Available from: https://toronto.citynews.ca/2019/12/04/canada-healthcare-system-john-river/
  2. Health Canada. Social determinants of health and health inequalities [Internet]. 2020 [cited 2021 Jun 8]. Available from: https://www.canada.ca/en/public-health/services/health-promotion/population-health/what-determines-health.html
  3. Nestel S. Colour Coded Health Care The Impact of Race and Racism on Canadians’ Health. Toronto, ON; 2012.
  4. Canadian Institute for Health Information. Proposed Standards for Race-Based and Indigenous Identity Data Collection and Health Reporting in Canada [Internet]. Ottawa, ON; 2020. Available from: https://www.cihi.ca/sites/default/files/document/proposed-standard-for-race-based-data-en.pdf
  5. Public Health Ontario. Ontario Marginalization Index (ON-Marg) [Internet]. 2018. Available from: https://www.publichealthontario.ca/en/data-and-analysis/health-equity/ontario-marginalization-index
  6. Adjei JK, Adu PA, Ackah BBB. Revisiting the healthy immigrant effect with diabetes risk in Canada: why race/ethnicity matters. Ethnicity and Health. 2020;25(4):495–507.
  7. Shah BR, Chiu M, Amin S, Ramani M, Sadry S, Tu J V. Surname lists to identify South Asian and Chinese ethnicity from secondary data in Ontario, Canada: A validation study. BMC Medical Research Methodology. 2010;10.
  8. Chiu M. Ethnic Differences in Mental Health and Race-Based Data Collection. Healthcare Quarterly. 2017;20(3):6–9.
  9. Subedi R, Greenberg L, Turcotte M. COVID-19 mortality rates in Canada’s ethno-cultural neighbourhoods [Internet]. 2020. Available from: https://www150.statcan.gc.ca/n1/pub/45-28-0001/2020001/article/00079-eng.htm
  10. IMS Magazine. Answering the call for COVID-19 research: PUBLIC HEALTH & EPIDEMIOLOGY. IMS Magazine. :8–9.
  11. McKenzie K. Race and ethnicity data collection during COVID-19 in Canada – If you not counted you cannot count on the pandemic response. The Royal Society of Canada. 2020;1–12.